Sharing the lessons along the way…

What does it mean?


I have been asked a few times since my last blog, “What does this decision mean?”

My best answer is simply, “I am not sure exactly.”

My bathroom mirror message.

My bathroom mirror message.

The truth is, I have no idea what will happen once the intrathecal baclofen pump is removed.  I only have the week I had without it in 2011 as a clue.

While that wasn’t a swell time, I was able to manage.  I could hobble around my own house, use a walker in open spaces for a while and did the wheelchair for distances.

Since my body is in worse shape now than it was in 2011, I have to presume that it might take a bit more of my own physical therapy to be there.

I still have many questions for two of my doctors.  I need to know if we can wean me down on the baclofen dose in the pump leading up to its removal, and I need to know what the plan might be for medication management in absence of the pump’s magical delivery system.

Since I cannot get appointments any time soon to ask these questions, I am going to try my hand at going through nurses and phone messages.  As I know more, I will share more.

In the meantime, I am making preparations.  I finally have my own washer and dryer right here at home.  I have a friend who is going to reinforce my wheelchair ramp out back.  I have to sand and paint my raised potty chair, along with various other little things.

I plan to continue to walk my dogs, but will need to get a power wheelchair or scooter to do so.  There are some logistical things to figure out also since I am not likely going to be able to drive my car.

All of that being said, an opportunity awaits to see how well I can rehabilitate my body once the pump is out.  I am ready!

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Comments on: "What does it mean?" (6)

  1. You certainly are entering a challenging phase Tawny!! Your attitude and enthusiasm are great and likely will help so much as you go through the changes. As scary as it is, might it not be a relief, and beneficial for your body to have the pump out? When researching the new muscle relaxant my neuro prescribed, I learned that it is related to baclofen, and that baclofen is available orally. Your idea to wean off the pump supply is a good one, might you be able to continue that drug in a pill form? Maybe as you reduce the pump dosage you could begin the oral dose so your body is not left without? Though I would imagine the pump dose is probably much higher and would take a lot of pills to replace. Washer and dryer, AND loaded up with mega rolls?!?! In spite of everything are you feeling a little spoiled? 😉

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    • Ha! I am not sure about spoiled (hehe) but I do feel some relief as this particular pump and my body haven’t gotten along from the start. It is the side effects of baclofen that were the tipping point for deciding to remove the pump, so I am not going to be willing to take it orally after the withdrawal period. It doesn’t help all that much in pill form for me anyway. I plan on using friends’ pools, hot tubs, etc. to help the spasticity and I can do yoga once the surgery heals. With the pump as it is, I cannot move my torso much to do any stretching.
      Hugs,
      T

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      • I meant spoiled for having a washer/dryer and a bunch of TP 🙂 Are going to try taking some other type of relaxant or antispasmodic medicine T?

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        • I know, T! 😉 I am still trying to get used to having the washer and dryer! I will have to take some other antispasmodic but am still not sure what I am willing to take. I am hoping my friends’ pools will help a lot and their hot tubs.

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  2. Anonymous said:

    Tawny you strength and determination are awe inspiring. Would you be able to drive your car if outfitted to use your hands instead? You know we are all behind you and will help however we can. You are too valuable to us.

    Like

    • Thank you! With practice, I am sure I could. I am not sure my car can handle those modifications. I will likely have my hand tremor back as I did in 2011, and I am not sure how that will impact hand controls either. Maybe with enough rehab I could drive with my legs. There are many unknowns. I am operating on my best guesses for now until I get there. 😉

      Like

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